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Sara
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Posts by Sara
Adventures in Neurologists Peddling Pharmaceuticals
May 13th
Tysabri : A picture is worth $6900!
My parents assured me that although they’ve gone to many MS events they had never been to a spectacle like this before.
Last night I trekked down to the basement of a branch of the AnMed hospital in Anderson, SC to attend an MS event my parents had alerted me to called Dialogue of Hope and Health. I can’t deny that I was hoping that the “hope” in the title of the event referred to the new oral medications soon to be available (at least in other countries) or perhaps stem cell developments. It turned out to be something between a sales pitch and damage control conducted by a local neurologist and a Tysabri sales rep.
In my opinion, it is a questionable ethical choice for a neurologist to invite his patients to a deceptively named seminar to be pitched to by a drug rep with only negative statements about alternatives and without providing a forum for the other MS DMD manufacturers to respond to allegations leveraged by the doctor and rep or to the questions posed by the attendees.
Tysabri is a relatively new drug, and I doubt my neurologist has more than a few patients on it. This neurologist does not specialize in MS but still drew what appeared to be at least 40 Medicare patients all on Tysabri out on a Wednesday night to wander around a hospital until they found the basement conference room. He said he organized the meeting (I wasn’t aware he had organized it until it had started) to eliminate some questions floating around. In other words, to get his Medicare patients to shut up about taking “medication holidays” and switching from Tysabri.
Time likes the word “Googleville” too!
Apr 4th
Greenville loves Google!
Happy Easter! We’ve spent the day watching my uncle teach my nieces to golf. In one afternoon they are already better at it than I am at even one minute of put-put. Better even than I am at Wii golf. I understand that it’s all in the wrists, and I have wrists, but my wrists are permanently at odds with golf clubs.
While reinstalling Diablo II on my computer (don’t ask me why) Will discovered that WYFF has a video up alerting us to this Time Magazine article about Google Fiber. If you have an interest in either the Greenville community or the Google Fiber project, it’s worth viewing both. The Time article features Greenville’s effort almost exclusively. No matter what happens, I’m exceedingly proud of our town for pulling this together. From everything I’ve read, Aaron von Frank is to thank for leading this endeavor. Will and I both work in the tech industry downtown and have never met him, but I hope one day we can thank him personally for doing such an amazing job. The concept was simple, perfectly relevant to the challenge, and superbly executed.
Our hats are off to everyone who helped with the planning and all those who twirled a glow stick. Greenville is in your debt.
Googleville!
Mar 19th
Google On Main!
Why haven’t we posted about this before?!
It’s old news to many now (mostly because it was announced a month ago) that Google is going to provide ultra-highspeed Internet access in one or more trial communities. Their marketing documents claim the access will be available in 1 Gbps speeds and beyond which sounds too good to be true!
Greenville, G-Vegas, Beloved Home is vying to be Google’s fiber test-ground. If we’re chosen the benefits for the city are virtually limitless. To get Google’s attention, the city is organizing a demonstration tomorrow evening. Thousands of Greenvillians are assembling armed with LED glow sticks in different colors behind the Peace Center and marching down to Falls Park on the Reedy River to form the word “Google.” Helicopters will film all this from above, and I anticipate a virtual downtown block party when they finish. I don’t have many other details, but I’ve heard there will be much more to it. Will and I will try to be on-site with a camera to document the event. I’d love to take part but with my recent MS attack I don’t think I’m reliable enough to make the walk. As I joked last night, from a helicopter I would look like a lost packet hobbling around trying to find a bench. I really want one of these reusable glow sticks though.
Greenville Online has reported on this a little and the official site for the event is WeAreFeelingLucky.com, a reference to Google’s “I’m Feeling Lucky” search feature.
Greenville was also one of the highlighted cities in this article. According to this, our competition is :
- Columbia, Missouri who held up signs during a basketball game. We watched this game and I missed this completely.
- Grand Rapids, Michigan who is organizing a flash mob fiber ring of people holding hands.
- Peoria, Illinois who sang a song and taped themselves doing it.
- Topeka, Kansas who renamed their city to Google for the month of March.
- Sarasota, Florida who renamed City Island to Google Island.
- Duluth, Minnesota who organized a Googlefest and dunked their mayor into Lake Superior.
Sure, we’re biased because we live here, but we love Greenville, SC and I can’t think of a better place for a Google Fiber Trial. We have tons of cool businesses already in the area (Michelin, BMW, iCar, Windstream) not to mention some big businesses coming in that will bring a lot of new jobs. Greenville, SC was also rated the #1 Micro City in the United States in the 2009/2010 North American Cities of the Future. Check out the links and come support Greenville!
UPDATE : We missed the event entirely (my fault), but here’s a great photo gallery showing some of what went down. I’m keeping my fingers crossed!
Greenville loves Google!
Great job on the logo!
The Book I’ve Been Waiting For
Mar 19th
Your Money: The Missing Manual
In the past weeks, Will and I have found ourselves busy with a variety of things. Will was quite sick for a few weeks but seems to be mostly better now. I have been going haywire trying to finish cutting out all possible medications that I’ve been on since my diagnosis. We’ve been planning out some home improvements that will eventually help sell the house one day, and as a result have been poring over paint samples, hardware ideas, etc. We have been adjusting to changes with the recent Windstream acquisition. We have managed to cut out about a third of our book collection for donation. And last, but not least, I’ve had another MS attack (my 3rd since December of 2008). Not much could jar me from dwelling on all of this to come out for a blog post, but today I realized how close we are to the release of a book I’ve been looking forward to for a long time.
For the better part of our marriage (and lives) Will and I have been exceedingly unconcerned with money. Not because we had it, but because we saw it only as one of many tools in life for happiness. This has gotten us into a bit of a mess from time to time. As we’ve written before, my MS diagnosis and Vlad’s battle with cancer gave us a few epiphanies. Having money saved and using it for security and happiness is far preferable to having debt and striving to not dwell on it. Imagine that. We’ve been following the Get Rich Slowly blog for awhile and have learned a lot from it. The author, JD Roth, has finished his book, Your Money: The Missing Manual, and it will finally be available on Saturday. We have anticipated the release of this book for some time and can’t wait to read it. While we have used a lot of resources (family members, websites, neighbors, friends) to find out practical advice to change our financial state, I can state with certainty that Get Rich Slowly has had more influence and has been more helpful than any other source. Hands down.
There are a lot of blogs and ideas out there for getting your finances in order, and even more scams to screw you up more than you thought possible. Will found GRS and we became hooked. The site is full of great advice from someone who started out as a normal person, deeply in debt. He worked hard, changed his habits, and pulled himself out of the hole. He went on to learn a wealth of very practical information about savings, investment, frugality and more.
Once we’ve finished Your Money: The Missing Manual, I’m sure we’ll have more to say. Based on our experiences following Mr. Roth for the past few months I know we will have nothing but praise.
Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.
Jan 21st
Interferon injections are more than unpleasant.
I am so glad I make a habit of reading BBC News daily as US news agencies frequently skim over important things in favor of the shocking or violent. Today they published a story about new oral multiple sclerosis treatments that are likely to be available in England in 2011. As someone whose liver does not particularly like Interferon and is afraid of the risk of death from Tysabri infusions this might be a godsend. Since interferons are not available as generics (they contain living organisms and are exempt from status that would let them ever become generic) this could open inexpensive and more successful treatment options to a host of people who have no option but to live with the effects of the disease untreated. The full article and link to it are pasted below, but here is the basic information you want:
- The oral drugs in question are Fingolimod and Cladribine
- The drugs are considerably more effective at reducing relapses than current available treatments
- The drugs may increase your chances of herpes and cancer
Multiple Sclerosis : Year One
Jan 16th
MRI images from the side make you look like a monster!
My first year of MS diagnosis wrapped up about a month ago and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially. Here comes the first downer post of 2010!
No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.
2009 Carolinas Consortium on Multiple Sclerosis
Nov 7th
National Multiple Sclerosis Society
The 2009 Carolinas Consortium on Multiple Sclerosis is next Saturday November 14th in Charlotte at the Westin Hotel. This event is run by the Mid-Atlantic Chapter of the National Multiple Sclerosis Society.
The consortium will run from 8:30 AM to 3:15 PM and features some great workshops, lectures on new and developing breakthroughs in multiple sclerosis treatment, and a catered lunch with a speech from a nationally recognized researcher in the field of multiple sclerosis.
The cost to attend is $12 per person (includes the cost of the catered lunch) and it sounds like the workshops and lectures will be extremely informative.
